Anyone have experience with steriods for preemies?

Re: Anyone have experience with steriods for preemies?

• kaylaaimee

  March 2011

  Are they wanting to do them through and IV or blow them? I ask b/c Scarlette got hydrocortisone steroids for her lungs when she developed BPD but our doctors used a type that they blew into her lungs through the ventilator. They told us there was less risk doing that than injecting them via IV.

  Is that possibly an option?

  Also, she did receive a small does of cortisone via her IV for about a week following her PDA ligation b/c she went into shock after surgery and she needed it to reduce the stress on her system. I am not positive if the two are one and the same but I would say we definitely saw positive results from it. Our feeling was that if she did develop CP or anything, we'd honestly never know if it was a result of one of her many treatments or just the prematurity. But I trusted that neo of ours the most.
  
  
  

  Keep up with Scarlette at http://kaylaaimee.com

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• OscarQ member

  March 2011

  Kevin came thisclose to needing steroids but luckily turned a corner at the exact last moment.  We were counseled on them many, many times though and I was confident that if our neo said it was the best hope for his lungs improving than I trusted the neo.  She told us many times about the studies and also that they were done 20 years ago and that steroids are used very differently now (short stints of time) than they were when the studies were done (weeks long courses of treatment).

  Another family in our NICU that we've become friendly with - their baby just completed a round of steroids and they moved him to CPAP this past week.  I haven't had an update on how he is doing now but the steroids seemed to be the kick he needed to mature his lungs.

  Good luck! 

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• njdcgirl member

  March 2011

  Andrew was on hydrocortizone for awhile.  They weren't enough to get him off the vent, unfortunately.  Then we moved on to a course of Decadron, which is just what he needed - he moved to CPAP and never looked back.  As pp said, many of the studies that show harmful effects from these steriods were used in ways very different than my NICU used them.  We were nervous about it, but trusted our doctors and I'm glad we did. 

  Good luck with your decision.  This was one of the first things we encountered in the NICU that I felt like we were really the decision makers.  Until then, most of his treatments were necessary.  The use of the Decadron was our decision ultimately - we could have said no and just waited to see if his lungs would improve without them as he grew (he wasn't at a high level of support - but just not able to get off the vent). It was super stressful, but in the end I think we did the right thing - he was beginning to fight the vent, and had an airleak too that resulted in a few very scary desats. 

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• wishesforfish

  March 2011

  The decision over whether to give steroids is an agonizing one. DS (my pprom baby) had been on the vent for 28 days when they brought up the topic of steroids. He had been on the oscillator for 7 days, then jet vent for 3 weeks. Our decision was made for us when he started going downhill..he had been maintaining 30-40% O2 on the jet vent, but started needing 60%++. 

  Overall, we felt that for DS, the benefit outweighed the risks. We knew that he had very bad lungs, and we were also afraid that once he went into a downward spiral he would not come up. We were also afraid of the trach. At the time of the decision we felt like we would just deal with any issues that would come up, like CP, NEC, etc. 

  10 months after that decision, I'm still glad I chose the steroids because he did come off the vent, and that was directly attributable to the steroids. He was on a 6 day course of dexamethazone and went to CPAP after the course was done. He spent one month with no weight gain because it took soo much energy to breathe by himself, but he made it. 

  DS has floppy tone in his trunk, does not sit unassisted at 9 mos adjusted. No one has mentioned CP yet, and honestly, steroids would just be one factor out of many possible ones that contribute to (possible) CP in DS's case. I won't sugarcoat the situation though. It's not easy to have a child with SN, even "mild" SN. 

  If you have the time, I would do some research on long-term ventilation outcomes on neonates. I think I read something about being on a vent past 33 weeks gest being detrimental, but I can't be sure.

  Good luck. It's a tough decision to have to make. Your family is in my thoughts.

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• Cara03 member

  March 2011

  Our LO needed steriods to come off the vent, too, I can't remember how many days of IV steriod treatment he had, but he did make it to CPAP successfully after that. After reading this post I am surprised that I didn't hear about the possible negative aspects of steriods. As I remember it, our neo just said that this would help his lungs to come off the vent and it wasn't presented as a risky thing. Hmmm... Maybe my memory is just choosing not to remember the bad.

  Good luck with your decision. Wishing you lots of lung growth!!

  

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• msalinardi@live.com

  March 2011

  Our neo talked to us about them and said that it was a possibility that DD would need them. They never asked for permission, they just gave them to her. I was pretty pissed at the time, but they did get her off the vent. She literally went from having been on the vent for 6 weeks and needing anywhere from 40-100% O2 to C-Pap at 30% O2  in a matter of 3 days! It was nuts!They were her turning point and the rest of our stay was pretty much smooth sailing. DD is almost 2 and only has a speech delay and a tiny size to show for her stay in NICU.

  Good luck! I hope your LO comes home soon!

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